There comes a time when changes need to be made. And sometimes those changes are dramatic.
Today is one of those days for Becky.
Starting today, Becky will no longer receive her food via a pump. She has been fed by a tube since she was born. For almost 18 months now, we have used a pump to push feeds into her stomach. We started with an OG tube in the days after her birth. This tube was threaded through her mouth and down into her stomach. She loved it.
As the NICU team evaluated whether or not Becky could take feeds orally, they switched to an NG tube which is placed down the nose. This was also loads of fun for her.
We used this tube to give Becky trials with nursing and bottles. I tried to nurse Becky but she just didn’t have the coordination nor could her heart support such a intense effort. She wasn’t able to do much with the Becky bullet either.
When she was 9 days old, the NICU team discovered that she had malrotation and an emergency abdominal surgery was necessary. During an incredibly difficult day, and under a time crunch, I had to make a decision for the surgeon to place a G-tube. Becky, with her serious heart condition, was unlikely to gain enough weight on her own to adequately bulk up for her open heart surgery. It made the most sense to pre-emptively place the tube during this first surgery.
Honestly, I was frightened at the prospect of a G-tube and tube feedings seemed like Frankenstein medicine to me. But it was absolutely the right decision. This tube goes directly into her stomach and we place her feeds in a bag which hangs from an IV pole. We’ve fed her like this since October 2020.
We’ve also used the tube to give medications which is much easier than forcing them into her mouth. So we’ve all grown accustomed to this way of feeding Becky. We’ve hung feeds in the car, on a plane, and in the stroller. Becky’s godparents even have a system set up at their home using a kitchen chair.
Becky is now healthy enough to begin a tube wean. At her recent cardiology follow-up, Dr. Roberson began questioning our reliance on the tube. He cleared her for a tube wean along with the hospital dietician and feeding therapist. It’s time for Becky to feed herself. She has made great progress with chewing and eating as she has a strong appetite. She particularly likes fish and sausage but remains suspicious of fruits.
She still struggles to take liquids by mouth. The ENT surgeon believes everything has been corrected from an anatomical standpoint. Now she just needs practice swallowing from a cup or sucking from a straw. We will still use the G-tube to give her water for now. But she will keep practicing in weekly therapy sessions.
The G-tube will remain for at least another year. The team won’t consider removing it until Becky makes it through another cold/flu/rsv season. She is still susceptible to respiratory illnesses as this past winter showed us. The tube is a great insurance policy for the time being.
Yesterday, Becky and I drove down to the hospital to pick up a baby scale. We had an unexpected opportunity to visit with Dr. Julia, the fellow that took such good care of Becky during her second open heart surgery.
Now that we have the scale in hand, it’s game time. The plan is really quite simple: we cut out the tube feedings, cold turkey. Becky will receive 3 meals and 2 snacks a day. Taking away the tube feedings should stimulate her hunger. I will give her 180mls of water 4 times a day via the tube. This will meet 75% of her hydration needs; her food should provide the rest. Every Tuesday and Thursday, I will weigh Becky and report this to the hospital dietician. If at any point she loses 10% or more of her body weight, we will go back to the tube feedings.
Becky weighed 21 pounds even this morning. She was moving around quite a bit but this was the consistent number. Now it’s time to start eating. Success is within her grasp. Or her mouth.
Eat, Becky, eat!